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TEXARKANA, Texas (CN) – Twenty-eight people claim in a federal antitrust lawsuit that Lyme disease victims are being forced to pay hundreds of thousands of dollars for treatment because health insurers are denying coverage with bogus guidelines established by their paid consultants, who falsely say the disease can always be cured with a month of antibiotics.

Suffering from migraine headaches, an irregular heartbeat, hearing problems and nerve pain, lead plaintiff Lisa Torrey says in the lawsuit filed Friday in Texarkana, Texas federal court that she visited 36 doctors, some of whom misdiagnosed her with multiple sclerosis and fibromyalgia and said her symptoms “were all in her head,” before she was properly diagnosed with Lyme disease.

People get the disease from the bites of infected ticks and many break out with a large red rash around the bite that looks like a bullseye.

There were more than 28,000 confirmed cases of Lyme disease in the United States in 2015, 95 percent of which came from 14 states in the Northeast and Midwest, according to the Centers for Disease Control and Prevention. The agency estimates that 300,000 people are infected with the disease each year.

Torrey – represented by lead attorney Eugene Egdorf with Shrader & Associates in Houston – lays part of the blame for her lack of health insurance coverage on the Infectious Diseases Society of America, or IDSA, a medical association whose 11,000 members research diseases and lead panel discussions about them. IDSA also develops clinical practice guidelines.

Torrey claims in her lawsuit that several major health insurers decided in the 1990s that treating Lyme disease was too expensive and bad for their bottom lines, so they paid IDSA-affiliated doctors – who were researching, not treating, Lyme disease – to establish arbitrary guidelines in 2000 that said the disease could be treated with 28 days of antibiotics.

“These doctors knew that short term antibiotics of twenty-eight days failed to treat up to 40 percent of patients with Lyme disease. This means more than 100,000 Lyme disease patients every year would be untreated if the IDSA guidelines were followed,” the lawsuit states.

Torrey claims that she and others suffering from chronic Lyme disease need antibiotics for several months until their symptoms go away, but that the IDSA doubled down in 2006 and once again tapped doctors on the payroll of the defendant health insurers to come up with even more restrictive guidelines for treating Lyme disease.

“The 2006 IDSA Guidelines actually ‘promote the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 28 days of antibiotics,’” the lawsuit states. “Even though the IDSA guidelines are not rules or requirements, the insurance defendants treat them as ‘de facto’ law that must be followed by doctors and refuse to cover treatment beyond the IDSA guidelines.”

According to the lawsuit, the 2006 guidelines reference an article by Dr. Leonard Sigal, a defendant in the lawsuit, in which he claims “’Chronic Lyme disease’ is a common clinical diagnosis in some geographic areas and is based on thinking that is at odds with scientifically validated findings.”

Torrey says the insurers began working with Sigal to deny Lyme disease coverage in the 1990s.

Sigal testified in a 1996 deposition that the defendant insurers paid him $560 an hour to review Lyme disease files for them and that he almost always denied coverage, according to the complaint.

Torrey claims doctors who criticized the guidelines as too restrictive put their medical licenses at risk as they were targeted by the insurers.

“As a result of their speaking out, from 1997 to 2000, more than 50 physicians in New York, New Jersey, Connecticut, Michigan, Oregon, Rhode Island and Texas were investigated, disciplined or had had their licenses removed. Many of these doctors were reported to their medical boards by the insurance defendants,” the complaint states.

The insurers also allegedly reported doctors who were treating chronic Lyme disease to state medical boards, leading many doctors to refuse to treat Lyme disease patients.

The results of the treatment guidelines and doctor bullying have been disastrous for Torrey and her co-plaintiffs, she says.

They’ve been forced to travel long distances to find doctors willing to treat them, if they are healthy enough to travel, and pay thousands of dollars out of their pockets because doctors do not want to submit their claims to insurers, the complaint states.

Torrey says she suffers every day from the disease that can kill its victims.

Other plaintiffs are suing for the estates of Al Barnes, who developed paralysis before dying from untreated Lyme disease, and David Kocurek, who was an aerospace engineer and worked for NASA. Kocurek suffered from symptoms akin to the trembling and jerky movements caused by Parkinson’s disease.

“He visited more than 25 doctors and was told he did not have Lyme disease. He even tested negative for Lyme disease based on the IDSA testing guidelines,” the lawsuit states. “He was only diagnosed with Lyme disease after he researched the issue himself and convinced his doctor to test him again.”

Kocurek paid for his treatments and died from the disease in April 2016.

To back their RICO claims, they say the insurers formed an enterprise rife with mail fraud and wire fraud with the IDSA and its panelists, by mailing fees over state lines to the panelists to pay for their allegedly fraudulent Lyme disease treatment guidelines.

IDSA spokeswoman Jennifer Morales declined to comment on the lawsuit, but defended its Lyme disease guidelines in a statement Tuesday.

“While anecdotal evidence may be relevant at times, it cannot be the basis for guiding patient care. The published guideline, ‘The Clinical Assessment, Treatment and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis,’ reflects the best information science provided to the broad range of physicians who might treat a patient with symptoms of Lyme disease,” she said.

Cigna and Anthem said they don’t talk about pending litigation. The other insurers did not immediately respond Tuesday to emailed requests for comment.

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34 Comments

They are right. It’s a terrible injustice to sick Americans. Got to have some new guidelines for our doctors. Their hands are tied. Essential oils are helpful but not a cure. Head and neck painful now. Memory next? I’m one of the victims.

THe more I learn, the more I believe the insurance-governmental complex has been responsible for obfuscating the truth about this pandemic out of the fear the truth would bankrupt them. THey have no vaccine, they have not expensive magic pill to sell, but they sure have a lot to loose if 50 million Americans started demanding top rate diagnostic testing, appropriate treatment and in many cases lifetime disability payments.

After seeing over 50 different types of doctors & incorrect diagnosis I finally was diagnosed correctly by a Lyme literate doctor and have remained CDC positive for over 15 years even after 18 months of daily IV antibiotics along with $1200 month babesia antibiotics treating babesia for several years because I have been diagnosed with 9 strains of it, taking antibiotics for bartenella, cat scratch fever, left bundle branch blockage, etc. After years of treatment and loss of job as engineer , loss of home, loss of retirement fund and spending all I had trying to get well I ended up filing bankruptcy and the head doctor of the hospital in my town told the doctor who ordered IV treatment at the hospital to stop treating me because even though she never saw me she said I did not have Lyme disease even though I texted CDC positive. I am now living in a low come housing for disabled seniors spending most days in bed even after all the money & treatment I did. The IDSA and the CDC & other government controlled agencies have done everything possible to deny the effects and tragedies of this disease.

Aurora — 18 months of IV antibiotics is not adequate. I had 5-7 years of IV ABX. It was like night and day. I worked most of that time as a computer science engineer. When my treatment was jerked, just like yours was, then I lost my job and so much more. I am slowly relapsing, but so far I have not been as sick as I was before I got treatment. I think I had Lyme disease all my life. Treatment works, early treatment if far, far, far, far, far, far, far, far, far superior. I am so extremely sorry for what you have unnecessarily been through. Treatment need not be so expensive as it is either.. We could have hyperthermic treatment, hyperbaric oxyger treatment, ozone treatment, and many other treatments along with ABX. Treatment could be coordinated and tailored to each patient, to not make it so expensive. I hope, hope, hope, hope and pray, pray, pray, pray that every one of these entities including the wormy doctor and Steere and the lot of them get sued billions. They have taken away our lives and thus do not deserve lives of their own or any profits for the criminal insurance companies, IDSA, CDC. The lot of them belong you know where, but at least in prison with no lives whatsoever. The criminals.

I think it’s well past time for a major lawsuit. We all know most doctors are refusing to diagnose and treat Lyme and co-infections, and insurance companies are refusing to cover treatment. This is a violation of our needed medical care.

In my case, I had positive IGenex lab antibody bands, then I saw a rheumatologist who sent out for an ELISA test which came back negative, and he announced I was negative. I happened to be herxing at the time from a successful first round of antibiotics, and I let him have it, per pent-up feelings from 25 undiagnosed years with Lyme!

Enough! Time to move on to real medical understanding, care and coverage! I wish this lawsuit all the best and we will be following it.

Both of my folks died from issues related to Lyme D I have been suffering with Lyme related issues since 1999 Have been denied medication Denied testing by insurance and denied being allowed to pay cash for both topical and oral perscriptions my Doctor’s have perscribed for me Have been told by the insurance medication was not working that was making a huge difference and cutting off when they have never met or seen me letters postmarked October but dated February deing me the right to appeal It’s a death sentence

In Florida: My family doctor stated “you might have to fly out of State for treatment” and also stated that a local doctor is currently be reviewed and may lose his license because he treated Lyme. As sick as I was I was astonished that in this century the only treatments available was a 28 day IV antibiotic> I was not well after that,,in fact.. I got worse and lost my job of 15 years. When I went back to doctor I was told I have to wait the 2 year limit and all he was allowed to do was give me another 28 IV antibiotic treatment? WHAT??? I wanted to work,, I was forced to seek medical help from a willing doctor who believed there was more that could be done… AND ,,get this … like a home made science project.. WE TOOK TREATMENTS FROM A BOOK! A well know lyme literate doctors book….was I in a SCIENCE FICTION MOVIE ,,no I was a the science project.. OFFICICALS MANDATED that I should have gotten better after 28 days of treatment. I did not ..I got worse! HOW CAN I GET ON THIS LAW SUIT???

Hi Robin, Can you told us the name of the book ? I am from Roumania and I m making a treatment in Germany only supplements because of an hospitally nozocomial infection…and I cant take any antibiotic. Thank you !

The stonewalling, misdiagnosing, all in your head responses to a debilitating and life threatening disease have to end. Lyme is a pandemic that threatens all of us. Our medical providers need to find effective treatments and not be punished for trying to help. Those that continue to deny the very existence of Chronic Lyme need to be sued to stop their control over the narrative of Lyme.

All Lymes patients have to get their hands on a rife machine! It’s hands on healing without the ok from Doctors or insurance companies and it works! Just google it! Many many stories about it’s success!!

Anonymous — Rife works for some, but not all. Another problem with rife is really getting the right frequencies. There are many Lyme treatments. They should be combined and customized for each of us. We have to help with the customization. It would really be no big deal to treat Lyme, it is just the criminals out there who want us to suffer and die.

I’m very grateful to the patients and the attorneys that are willing to confront and endure the enormous and stressful ordeal of a lawsuit. I hope the patients can stay positive, healthy and hopeful during this time. I think we should all support them in any way that we can. I’m so fed up with America today. I’ve been here for 57 years and I’ve observed our steady decline since day one. The immorality, lawless government and leadership and lack of ethics is beyond anything I could have ever imagined in my life. Adding to my gloomy perspective is the chronic nerve pain in my face and head 24/7 from bone and nerve damage caused by the tick born pathogens.

I have said it before and I will say it again. Why are we (at least 300,000 of us) allowing ourselves to be treated in this manner???? We talk and blog and preach to the choir! We demand “more research”! We allow our politicians,who have wonderful insurance paid for by our taxes get wonderful treatment for themselves and their families for TBIs from specialists. Yet, we keep complaining, complaining, complaining! How can I join in on this class action suit? Any ideas, anyone?

I agree, a country wide class action suit sounds great!!! I’ve been sick for 19 years. Nerve damage is now limiting my ability to do much of anything ~ no strength, no stamina, excruciating pain, and now difficulty sleeping. A doctor at a national conference once said, “to sleep is to heal.” I’m now even robbed of that possibility. I’ve watched lots of folks: talk, Protest, make films, make videos, lobby government, write books etc.. Too many good and decent doctors who really do want to help us are losing everything!!! Senator Blumenthal of Connecticut went after the IDSA, still NOTHING! I just hope somebody, in some lawsuit, somewhere, adresses the fact that some 10+ members of the IDSA hold patents on Lyme related research (or so I heard some years back). This HAS to influence their guidelines.Bottom line, it’s all about money!!! And we are all dying. To me, it’s a form of genoside, look it up. Good luck and prayers to all of you out there. Knowing you out there suffering and fighting keeps me going.

Any treatment will give relief to a person who is in pain and is suffering. One is willing to pay any price to end the debilitating and disgusting symptoms of TBIs. Any snake oil, herb, machine will give a certain amount of relief. It is called Honeymooning. The Honeymoon is over when one wakes up a month later and STILL is suffering from TBIs, has realized how much money has been spent, and still being told “it is all in your head”. Am here, done that! Still hopeful!

Ilads.org doctors are helping with the Lyme epedemic because they are treating our family. Our doctors take insurance and the others need to follow suite. Stephen Buhner, Byron white and Dr. Rawlins have helpful treatment and many others. The lawsuit needs to take place because insurance won’t pay for treatment that is helping us. Herbs/supplement/ essential oils. The doctors listed above have their own research and some of it is 35 5o 40 years old and it should account for something. If people are using antibiotics for months and months and back at square one then why should this be repeated for everyone. If it doesn’t work then what is working should be taking place. Doctors say that have been healed or in a sort of remission from herbs/ supplement/ essential oils, lazier therapy, hyperbaric oxygen. and strict diet. If the insurance companies don’t help with Lyme disease, then more people will be on disability for fibromyalgia, ms, chronic fatigue, pots, cyclical vomiting, dysatouqnomia, celiacs, gastorpereis migraines in the stomach and many other diagnosis. (These are some that were thrown around in our family during the 20 years we were misdiagnosed) A DNA test ordered by our ILads.org doctor helped us to get the proper treatment and we are getting so much better. Thank God!!!!! If antibiotics work then use them, if they don’t then try something else. For some, they may be getting better with long term antibiotics. I haven’t personally heard of any yet. I am sure they are out there. Thank you for the lawsuit. I certainly hope it can make a positive change, just like the little girl suing the government for not permitting cbd oil to be allowed in all states. Hmm another natural herb that makes her illness much more tolerable. Insurance should pay for this and everyone should have access to it. My drugs cost me $1.62 and my herbs cost me $200.00 per month per person. My entire family is infected. We can’t afford this. Thank goodness for credit cards and good credit for now.

It took us 3 1/2 years for us to find a doctor that was able/willing to diagnose my son with Lyme disease. He is now on long term antibiotics, but our insurance company is denying some of the necessary blood testing (we are paying ourselves). I am all for a class action suit!!! And the worst part is… I have run across so many ignorant medical doctors!!!!!

Can others join in the suit as co-complainants? After years of on/off excruciating pains in my wrists, knees and ankles I suffered from a Level III heart block which came close to killing me. I received a pace maker 14 years ago for the block but that triggered me to seek the alternative route of treatment after a heart doctor friend of my sister asked “has he been checked for Lyme” The local Palo Alto Medical Foundation adhered to the IDSA tripe and even (in 2003) went so far as to say “Lyme deosn’t exist in California”. After a few months of treatment at my expense, – no more pains but the treatment went on for 3 years. Even though the CDC guidelines at that time didn’t confirm Lyme, current test clearly show that I have had Lyme.

17 years and counting. This disease needs to be treated as just that; “a disease “ and a serious one at that. The treatment of patients needs to change. Tired of being told we are crazy. Even after a positive Lyme test still treated poorly. Kudos to this group for trying to change things for the better.

Hope this raises even more attention. The growing number of people with Lyme disease is a major concern. Lyme Iives in Illinois yet we have to go out of state to certain Dr’s just like everyone else and it becomes a long process just to see the Dr willing to treat. WAKE UP! I know we are only promised death in life, but don’t let government decide this. I pray for all you lyme warriors out there to keep fighting. There will be a cure if there isn’t already one that the cdc and governement are with-holding from us.

I worked for Illinois government 35 years. I was misdiagnosed (no lawsuit as no attorney would help) with MS and given interferon for 3 years. I nearly died. When properly diagnosed my insurance denied coverage. I lost my family home as I had to sell to pay for meds. I still battle daily and travel 7 hours annually to see a doctor who saved my life. I’m now retired on a modest income, around $40,000 annually but must pay for Lyme treatment as I travel out-of-network. This disease ruined me financially and nearly cost me my life. I believe those who created this bacteria should be held responsible and accountable. Plus side – I get to enjoy my grandkids – Thanks to Dr Steven Meress.

The World Health Organization now has classified “gaming addiction” as an addictive behavior disorder in it’s International Classification of Diseases! I have to listen to treatment centers and doctors saying that they treat the behavior disorders of gaming addiction, drug addiction, alcoholism, along with a bunch of other “behavior disorders”, for little to no cost if one has health insurance coverage!?!? Has anyone else heard this on the radio? I engaged in no “behavior disorders” when I was bitten by a tick! I did not smoke a tick, drink a tick, inject a tick, engage in any other behaviors involving a tick! Why does Medicare, Medicaid and other insurance cover these “behavior disorders”? We with TBIs are not recognized as being ill and are being denied insurance coverage?? This is a DISGRACE!!!

Does anyone have an answer to why this lawsuit cannot be for all patients? If there are 300,000 patients infected a year, then there are millions of us. All with our unique stories, all tragic. Entire families. Over 40 years here sick for myself, all our children dx and sick. Most likely born with it. I cannot go one much longer without change. How do you unite millions of sick people? It is long overdue.

I have lyme because my Drs. would not give me the anti biotic when I got the tick bite.I called them the day I found the bite in May of 2003. I finally found a Dr who treats lyme and have taken doxy since.Lyme gave me a heart murmur and skipping heart beat.

I am based in CA and have to get treatment in Arizona. I have had a similar issue treating my chronic Lyme, over 50 doctors and have been ill for about ten years. We found a treatment that is helping me about a year ago and we think I will enter remission soon. Is this a class action? Can the firm take CA clients? I went to college in Texas. I would like to opt in if possible. I have extensive data including tests, lab fees, emails , etc. please help.